How has Parkinson’s added to your life?

[John Wick]

Get up every hour from 12 to 4. Urologist said definitely sideeffect of PD. Neurologist had said no.

[John Wick]

this was sent to wrong question.

[frito]

Have met many special people in Rock Steady Boxing class. Such positive attitudes and always a smile.

While my symptoms are rather mild at the moment a number of participants are are experiencing severe symptoms. These folks provide motivation for the whole group. Not sure how some do it but they set a great example

[Karla Burkhart]

I was diagnosed 10 years ago and started rocksteady boxing eight years ago. It’s been a real blessing in my life. I have friends that understand and friends that are helpful if I need them. Also other friends are helpful when I need them and that is very much appreciated. Life is good and every day has something to look forward to.

[Ally]

Thanks for sharing, Karla and Frito. It’s really awesome to see how the Rock Steady program continues to have such a positive impact on so many folks in the PD community. I don’t know much about the program’s origins but I hope that the person or people who started it know just how much it is helping people, both physically and socially/psychologically.

[Sherman Paskett]

When I first read the question, I came up with: more expense. Then I read the post about Rock Steady and thought seriously.

One thing I have had to learn is to depend on others. I have never needed to do that before. I considered myself self-sufficient. Now, 13 years post-diagnosis, I have learned I can ask friends and neighbors to do things I no longer dare attempt: climb up on the roof and do a repair, move stuff in our home, do small repairs–it’s an endless list–and no one has ever said no. Rather they drop what they are doing and come help me, like I used to do for them.

I started Rock Steady two months ago and now have a dozen friends with the same illness. We don’t dwell on it. Usually when first introduced someone will ask “When were you diagnosed?” and that is the end of the PD discussion. We all know where we are and what we face; no need to go beyond that one question to find out.

So, what PD has brought me are friends and helpers.

[Mary Beth Skylis]

What amazing post. Thank you for sharing, Sherman. Asking for help is always hard for me. But one thing that makes it a little easier is knowing that chemically, helpers receive benefits too. And I think it naturally creates community, which is pretty cool. I’m so glad you found Rock Steady and have friends around you.

[Tom1959]

Somewhat a difficult question to answer but I would say overall Parkinson is not added to my life. There are certainly ways my life has changed. I’ve gained new friends volunteer with numerous Parkinson’s groups and trying to be an advocate whenever I can. However, I can’t say that this is made a quantifiable change in my life. If given the choice of my current life versus my life without Parkinson’s. I would take life without Parkinson’s in a heartbeat. This is not to take away from anyone whose life has changed for the better. Am happy for them and wish them well.

[Krukar]

Hi Ally,

I am so happy that I can reply!

My diagnosis changed from Parkinsonism in 10/2020 upgraded/downgraded last year to P.S.P. (progressive supranuclear palsy) sounds tough and it can be. Thank the Lord for my wife Fraya a great partner. Thanks for my great Medical team. So with the new diagnosis came a Medicine reevaluation and change. My mood has improved a lot. My P.S.P. meds have been more effective. That has been a blessing. I have begun to exercise with even more focus. Today I feel like we are living a miracle. My walking has improved so much and we are doing it daily again, we had stopped walking consistently. P.S.P. is rarer and fatal but really just more challenging. I do more on-line exercises, lots of Tai Chi and more boxing with my cat. Things have changed but thanks to Jesus we have readjusted to the blessing. Thank you lots for the question! You have been a great part of our journey. Fraya says Hi. Blessings, Mike

[Ally]

I always love hearing from you, Mike, and was encouraged by reading your update. Your positive, grateful heart and perspective in the face of challenges continue to inspire me. Thank you for sharing your story and please tell Fraya hi from me, too!

[jeane]

My husband Joe was diagnosed almost a year ago, but has had PD for a long time without a diagnosis. It’s still too soon to say if the disease has improved our lives in any way, but the diagnosis definitely made a change for the better. Before the diagnosis we could not understand why he was falling and had RBD, and many other symptoms. Because he doesn’t have a tremor the doctors said he couldn’t have PD. Finally they decided to do a DATscan which showed positive for PD.

Of course it’s been difficult accepting that he has a progressive neurodegenerative disease, but finally everything makes sense. And his treatment of carbidopa/levodopa resolves most of his symptoms at this point. We’ve been able to come up with a structure of medicine, exercise, sleep and hydration (we call it his MESH) that keeps him doing well much of the time, for now at least.

So, only time will tell if PD has any positive effects, but the diagnosis absolutely has.

[John Wick]

I am really happy that you have found peace by hanging with people that have PD, but I tend to disagree with you. I retired at 82, after working at 6 days a week and traveling all over US. I contacted PD when I was 78. At that time I was able to hang out with anybody of any age and go anywhere.

Now I have to select whom I feel comfortable with and possibly explain my tremors, possibly not eating a whole meal , and be extra cautious getting up and walking.

I really don’t want to be around people with the same type problems, luckily the gym I belong to and my trainer, understand my problems, ignore them and train me as they do others.

In summary, life does not get better, just more frustrating. Hopefully you have a great mate, or companion.

[Ally]

Hi John, thanks for sharing your perspective. Despite your frustrations it sounds like you have an adaptable perspective on your challenges and I think that is worth celebrating. What did you do for work that had you travelling so much? Do you miss your career now that you’re retired?

[JackieHC]

PD has made my marriage SO MUCH STRONGER because it has forced my husband and me — our 2 sons as well — to talk to each other about my disease. Last fall we went to a “Rage Room,” where we got to put on protective gear and smash glass bottles, throw plates and break stuff for 45 minutes! It was so cathartic! We all got to let off some steam about Parkinson’s that day.

I believe that my sons are more compassionate to others in general, and particularly to folks with disabilities because of my speech and mobility issues.

And I have traveled to Glasgow, Scotland (with a stopover in Iceland, where I was lucky enough to have built in an extra travel day so that I could go to the Blue Lagoon geothermal spa!!!) and Montreal, Quebec, Canada, as well as beautiful U.S. cities that I fell in love with but hadn’t ever expected to visit — Rome, Georgia; Providence, Rhode Island; and New Orleans, Louisiana, to name a few — all to talk to amazing people about Parkinson’s!!

Living with PD has forced me to learn about myself and what I really wanted to do when I grew up: be a Parkinson’s ACTIVIST! I was an environmental activist prior to developing PD, so it wasn’t hard to shift my focus slightly. I was able to use my writing skills to produce 2 resource guides (“The First Year: Parkinson’s Disease” (2005), sort of like a “What to Expect When You Are Expecting” primer for the newly diagnosed, and “Life With A Battery-Operated Brain: A Patient’s Guide to Deep Brain Stimulation …,” (2009) a primer on DBS. I have gotten dozens of comments and emails from other PwPs, saying how helpful these books have been. I have volunteered with all of the national PD organizations, served on the board of one of my state’s PD groups for 12 years, and lobbied on Capitol Hill. In 2006, I received the Paul M. Silverstein Award for Community Service from the Struthers Parkinson’s Center (our local Parkinson’s Center of Excellence) and the Milly Kondacke Award for Outstanding Advocacy from the Parkinson’s Action Network (PAN), the public policy arm of the Parkinson’s community that has since been folded into the Michael J. Fox Foundation. I even applied for and got appointed to serve a five-year term as a patient-representative to the U.S. Food and Drug Administration (FDA)!

Dopamine agonists have brought out my creativity. I have made and sold beaded jewelry, fused glass items, and watercolor and acrylic paintings. I have written and published poetry, erotica and short stories in addition to the numerous articles and opinion pieces I’ve written about Parkinson’s and the environment; PD’s effects on relationships; and its effects on our ability to communicate.

I am taking on one last project; I am attempting to produce a feature-length documentary. “Come Talk To Me” was inspired by a nightmare I had shortly after I was diagnosed in July 1998. I dreamed that I was in a nursing home, and my family would no longer visit me because they couldn’t understand my speech. I really hope that the Universe allows me to finish this, because I haven’t been this excited about a project in a LONG TIME!!

Yes, if things had stopped there, I probably could have declared the exchange a fairly even trade. But then, two years ago, I began to notice that my husband, who turned 62 on Saturday, July 27, 2024, was having memory issues. While he may have developed these problems anyway, I cannot stop myself from thinking that the stress of taking care of me has had a lot to do with their onset. My 27-year-old son has told me that he links his diagnosis with post-traumatic stress disorder (PTSD) directly to my young-onset PD. I’ve had symptoms since I went back to work in January 1997 — 6 weeks after he was born. NOTHING is worth the guilt I have over the pain and suffering that my PD has caused my family!!

[Ally]

Hi Jackie, you are a remarkable person and I am in awe of the way you’ve truly turn the lemon that is life with PD into lemonade. I’m sorry you have guilt about its impact on your family though. I don’t want to dismiss your valid feelings, but I hope you will give yourself grace. Every person and family faces challenges. Are the ones your husband and son face now related to your diagnosis? Maybe, but you can’t know for certain. Life is a rollercoaster and I’m glad you have some good people along with you for the ride. I’m sure they’re just as grateful for you!

[cary corso]

Wow, you’re an inspiration! I love how you’ve turned your challenges into opportunities to help others and pursue your passions. Your story is so powerful and relatable. I’m so sorry to hear about the impact on your family, but it’s amazing how you’re using that to fuel your advocacy and creativity. Good luck with your documentary project!

[mia]

My grandmother was diagnosed with Parkinson’s more than a year ago. I try to devote all my free time to helping her and keeping her company. But I try not to forget about myself. I have long had a dream of losing weight and recently joined a gym, I also Buy Wegovy Online for better results and I am glad that I can combine everything

[Ally]

Thanks for sharing, Mia. Best of luck with your goals! Do you enjoy being active?

[Sussan Thomas]

The only good thing that came from this damn Parkinson’s is the fact that I met some incredible people who I think I couldn’t live without. They are very supportive, and they love me for who I am. I don’t want to say that I’m glad I have Parkinson’s, but I love these guys so much that I don’t regret it as much now

[Ally]

Thanks for sharing, Sussan. Finding a community amidst the challenges of PD is certainly powerful. Did you meet most of your community online or in person? Do you have any advice for newly diagnosed folks looking to meet others in the PD community?